Trochanter Pain Syndrome PMR 2 Years plus - PMRGCAuk

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Trochanter Pain Syndrome PMR 2 Years plus

RoomsonFire profile image
17 Replies

What fresh Hell is this !

Anyone else experiencing a nasty Inflammation in their Hips ? So painful I can barely walk -

Lifting my Legs is sore , getting up from sitting and climbing Steps very difficult -

Physiotherapist diagnosed Greater Trochanteric pain syndrome -

Currently on Weekly Methotrexate 10 mg and Prednisolone 4 mg , down on gradual taper from 15 mg ,

Paracetamol isn’t having any effect -

Any suggestions for something Topical I can use please ,

It’s my Hip and whole right Leg including Knee which is worse affected

I think I did a bit too much walking last Weekend-

Volterol is not recommended I think with Steroids -

Have to get upstairs for the Loo !

any advice is welcome ,

Waiting list for Physiotherapist is 6 weeks ,

Thanks , and Happy Easter 🐣

Michelle x

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RoomsonFire
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17 Replies
PMRpro profile image
PMRproAmbassador

Try icing the area and look on the internet for exercises that you can start before seeing a physio - they can't do any more than show you the exercises. Try topical NSAID gel, Don't sit for too long and don't cross your legs - positions to avoid are shown in the link from York.

There have been a few posts about it recently. It is often seen alongside PMR - bursitis is part of PMR for many people. I have it - had it long before PMR was diagnosed after 5 years!

Is it both hips? If only one, try going up stairs lead with your good leg one step at a time so you aren't putting excess weight on the bad one. If both, try and get some crutches so you can take some weight off the leg as you go up.

If you change your title to Greater trochanteric pain syndrome it might bring up a list of past posts about it.

I linked this in the last post about it and someone said they found it useful

yorkhospitals.nhs.uk/seecms...

This is exercises from the NHS with videos of each and obviously aimed at the very start of exercises.

nhsinform.scot/illnesses-an...

These are also good but don't do any that hurt too much

myhealth.alberta.ca/Health/...

RoomsonFire profile image
RoomsonFire in reply to PMRpro

😻 Thank you PP very much for your helpful advice and support .

The pain has spread right down my Leg , my Knee too is super stiff,

I will take all of your advice

Best wishes ,

LoubieLou70 profile image
LoubieLou70

it is very painful I know, had it in my left hip last year for 3 months. If you search on the internet you will be able to find gentle exercises to help, be careful of non trusted sites though.

I take a stack of pain meds for other conditions, but still needed extra when I had this. But overall I think it was a case of time and gentle exercise, and not putting weight on the affected side, I do remember turning over in bed and laying on that side being hell.

When doing stairs best to do both feet on the same step until you move to the next one, always putting the weight on the other side, so to minimise pain.

It was my physio that advised what was wrong, as I was seeing them for chronic pain for other long term conditions, I think I have had similar issues in the past but not to the degree that was.

RoomsonFire profile image
RoomsonFire in reply to LoubieLou70

Thanks for your Empathy LL ,

It is a nasty thing ! And seems resistant to usual rest cure -

The spreading aspect of it is alarming, my whole Leg is Throbbing,

I will take your advice on gentle exercise

Best wishes

M x

Pixix profile image
Pixix

Yes, I’ve had it on my left side for three years…and yes, it’s hell. PMR Pro has given you excellent advice…yes, I do the exercises & yes, I need to go up & downstairs, too! My pain goes from hip right down to ankle. I have pain patches for another medical issues, but,, on a bad bursitis day, they don’t help, neither does tramadol that I take alongside! None of the pain relief actually stops the pain. I don’t know if it’s recommended, but I find heat a help…I have electric blanket on all night, & I’ve just bought an electric throw for daytime as the weather is so dreadful this year here in southern England!! I have depo medrone injections regularly, the one some months ago only helped for 3 weeks, but I had other problems. I had one of Wednesday this week, &, so far, it’s helping…but I’ve been resting. This week we need to prepare for decorator coming in, & empty furniture, clean behind it etc…I’m allergic to paint so we are moving out of house! If you find a cure, please let me know, especially as I have sciatica on my right side & problems with bursae on my feet, too!

PMRpro profile image
PMRproAmbassador in reply to Pixix

Have you investigated extracorporeal shockwave therapy? It is very effective for hip bursitis and once it has worked the effect lasts months.

random901 profile image
random901 in reply to PMRpro

That sounds interesting. Will investigate 🙂

Pixix profile image
Pixix in reply to PMRpro

Not yet, but on my list! I’ve seen you mention it before. I have extensive feet & hands issues atm, involving nerves & tremors & plantar fasciitis & carpal tunnel & swollen lumps on feet & OA in toes & subluxating ankle joint & fungal infection of nails & raynauds Phenomenum, &…new to me…subluxating tendons…surprisingly nasty! Oh, & postural hypotension is worse, breathlessness is new, as is a pulse rate which only averages 49-52. Hard to do all the subjects at one time! Dr ‘created’ an extra long appointment, I was in there over an hour. He tried to aspirate fluid from 3 swellings, but it’s set like sponge/jelly. He did 2 depo-M injections in feet & the one in trochanteric b. Sadly, those had to take priority over extracorporeal shockwave therapy discussion, but, if this bursitis injection doesn’t last 3 months (the first one did) then the shockwave discussion will be soon! I am definitely interested in it, & he’s very open to suggestions & discussions! Thanks for the reminder I appreciate it, S xx

RoomsonFire profile image
RoomsonFire in reply to Pixix

Thanks P for your helpful reply and empathy - Your experience sounds pretty like mine but worse ! Sorry for your troubles - I tried having my Leg up on a footstool , I Don’t recommend this plan - my knee stiffness was worse for being straight for an hour- I applied Flexiseq which helped slightly- I don’t think going for the heat cure is possible for me -I’m uncomfortable with Hot Flushes in over 18 degrees- I think Steroid and PMR related - I sympathise with you feeling stressed by Home improvements when you have limited mobility - I don’t feel up to starting any Projects until this Flare passes - Best wishes , Hope you feel better soon 🙏

Pixix profile image
Pixix in reply to RoomsonFire

Oh, I have major sweats, often my head pours like a tap…frequent bedding & pyjama changes! I do put legs up, but onky for about 40 mins, then down for 20-ish etc. Thanks, I thought home & garden improvements would be fun as paying for others for first time, but all 5 guys changed the dates, one 3 times, & it’s been a complete nightmare…& we still end up doing some of it to help…like dashing off to DIY while guy is putting sink it…etc etc! It will end!! Take care, Flexiseq is good stuff. S x

Harrywogan profile image
Harrywogan

I know what your going through, on holiday just now and limping for Scotland, and throbbing in bed at night,I keep doing the exercises but not if too painful. It's depressing.

Hobopoco profile image
Hobopoco

I've just been diagnosed with this, awaiting a physio appointment from the NHS for some exercises. I'm in early days of researching the underlying cause but I'm linking mine to vitamin and mineral deficiencies....... I've been diagnosed with Vit D deficiency and awaiting a confirmation test for Iron and B12 (caused by using PPIs for stomach acid which were in turn caused by NSAIDS). I've been on high dose Vit D for 10 days now and the pain has reduced when sitting and lying. It only kicks in when walking and prolonged standing which is progress. I've just read there may be a link with B12 too but don't know too much about this yet as still doing my research.

RoomsonFire profile image
RoomsonFire in reply to Hobopoco

Hello Hobopoco , That’s interesting , I was prescribed Evacal D3 when diagnosed PMR 3 years ago , and take multiple vitamins too , But am a Vegetarian so mindful of Vit B and Iron deficiency risks - I have had this flare 3 weeks now , Pain even sat still , also Headaches I think from the association Stress - - I hope you have relief soon and a Speedy recovery too 🙏 M x

Hobopoco profile image
Hobopoco

Thank you ☺️. I was prescribed D3 by the doctor but found some support groups who said for D3 to be effective you also need to take it with the right amount of K2 and magnesium. Doses are calculated by your weight. D3 causes calcium uptake to increase, K2 tells the calcium where to go e.g bones and teeth etc Excess calcium can harden and land in unwanted places otherwise..... Arteries and I believe calcify in joints too (dunno, still researching this one and I'm a laymen). Magnesium as we are all usually deficient and you use more to process the extra Vit D and also use more when you are stressed/in pain. There is a Facebook group called: Vitamin D and co-factors. UK. Loads of really helpful info on there. This combination has cleared up some of my niggly complaints like tinnitus, sinusitis, my eyesight has improved, palpitations have reduced, night sweats have gone, breathing is clearer (I had suspected allergies/asthma). Randomly my gums seem happier and that wasn't even on my list of complaints lol and I'm much less tired. It sounds almost unbelievable from just vitamin D. It's also reduced pain when sitting and trying to sleep. I'm nearly 2 weeks on the new regime and only got my hip diagnosis yesterday. Still can walk further than 5mins at a time but hoping to find some stretches to help. I'm convinced I'm iron / B12 deficient too. Probably the same for you if you're vegetarian. I think we get enough from the diet in our house but I'm not absorbing it because of the meds. Good luck and I hope you get some relief. Also, look into a book called The Magnesium Miracle by Carolyn Dean. I'm awaiting mine now but I've read a taster and it's eye opening how much magnesium does. Passing my limited knowledge on in the hope it helps and can reduce the needs for pharmaceuticals. I'm not against meds but the side effects can cause a chain reaction of other problems I'm finding. It's like health dominos lol

RoomsonFire profile image
RoomsonFire in reply to Hobopoco

Gosh ! I’d like to stay in touch so you can let me know which Vits and Minerals were the best 🙏 I have Tinnitoo ! An Electric sewing machine sound sound - Brrr stop Brrrr stop , very annoying, at night when it’s quiet - Vit K ? I’ll look into sources of that straight way - Thanks for your reply Hobo , I’m 64 by the way so not really ready for a Mobility Scooter willingly 😂 M x

Hobopoco profile image
Hobopoco

Defo stay in touch! It would be good to know if the supplements help. Tinnitus was the same for me. I was a mad woman going around the house turning off all the electrics to find the source 😂. I nearly bought a new boiler! Lol

Defo not ready for the scooter! ☺️

I take one of each of these at the moment. You could probably lose the middle one (I bought it before I understood balancing the D3 and K2 properly). Nutrizing K2 600mg and because I'm deficient I'm taking 700/800iu of vit D daily. You might need less depending on your levels. The NHS gave me 10000iu Vit D (take 2 tablets once per week). But they have me really bad heart palpitations and insomnia. So I've spread the dose and balance it with the K2 and sleeping well again.

You can get them on Amazon

.
Hobopoco profile image
Hobopoco

To balance the Vit D. I'm taking 6 of these a day which I'm still getting my head around this number as it seems a lot but it's because of the high dose Vit D. I take 2 tablets 3 x per day. It's early days on these but they seem to help relax muscles (like a bath with epsom salts which is also magnesium). They help to get a more restful night's sleep too and according to my Fitbit have reduced my resting heart rate which was through the roof recently.

I'm still playing with doses and it will be different for you. They have a document on that FB group with all the information and there is a lovely lady called Robbie who helped me

Magnesium

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